A long story short: My experiences living with Chronic Migraine and POTS, and other hard things I’ve been through, has opened my eyes to the fact that overall, we are pretty terrible at talking about suffering. At the same time–I’ve come to believe there is not anything more healing than simply being seen within our pain. Creating that space is what this space is all about. And it takes grit. ❤
Read on if you want the deets about me. 🙂
As a sophomore in college (Fall ’11), I started getting headaches once a week. I had just finished the best summer of my life working as a camp counselor. I had decided to pursue a form of special ed or social service instead of the nursing degree I was originally pursuing, and felt a deep joy about this choice. I was involved in campus ministry and had plans to give a talk on our fall retreat. Besides these random headaches that I could only kick with sleep, I was genuinely thriving.
Mid-November came around and, in addition to the headaches, I began getting hit with bouts of major fatigue. I struggled to get to my classes and showed no improvement on antibiotics for what doctors thought was merely a strong sinus infection. My acne became terrible. My lymph nodes were swollen. Yet, as time went on, doctor after doctor could not figure me out.
Eventually, after too many tearful phone calls, my parents picked me up from school to bring me home and work on “getting to the bottom” of what was going on with me (something that literally makes me laugh now). The general consensus from doctors became an unknown virus that would improve with rest. I finished the semester from my parents’ house and assumed taking all of Christmas break to take care of myself would have me back on my feet for spring semester (another now humorous thought to me).
A long story short: my headaches soon became daily, constant migraines that turned me into a college drop out (K, actually just someone that had to take a medical leave from college for a year and eventually transfer to a university near my hometown….BUT- I really like to sound rebellious). As I began working with a neurologist and diligently sought out to discover my food triggers for what now appeared to be Chronic Migraine, I slowly, one class at a time, worked back up to being a full-time student. After 5-years of taking classes through all summer and winter breaks, I eventually earned a Bachelor’s in Social Work degree with a minor in Religious Studies.
Fast forward to today? I still have Chronic Migraine. In addition to this, as I learned after a few weeks at Mayo Clinic, I have a dysfunctional nervous system and something called Postural Orthostatic Hypertension Syndrome (POTS), and Ehlers Danlos Syndrome (EDS). Although I have come a long way in terms of managing my pain, my head only seems to grow more sensitive. I can’t say I don’t wish I could eat whatever is served at parties, and I can’t say I’m never sad about not being able to work full-time or spend as much focused time with people as I would like. I still cry and break and struggle. A LOT.
But: I can say I now have a desire to serve and step into who I am created to be that is far stronger than it was when that first headache hit me in 2011. I can say I somehow have an MSW that grants me so many opportunities to do work I love daily. I can say I have family and more cherished community around me than I ever anticipated would be the case.
HOW IS THIS POSSIBLE? Two words: God’s grace.
Having a chronic illness has taught me there is joy in vulnerability and a beauty in sharing our suffering. It forces me, daily, to choose to believe the fact that I am loved for who I am and not what I do- that I can keep showing up, because I still matter and my life still holds meaning, even when it’s so different than I imagined it would be. It’s taught me to choose grit.
Although it is DEFINITELY. NOT. EASY, I do believe (strongly) that what suffering has taught me has somehow made my life better for it.
Also, my name is Carrie. 🙂 So glad you are here.
Major throwback, but one of my faves.